Copd/pulmonary fibrosis

[patcarolyvonne]

Hi all,

I have copd and pulmonary fibrosis and over the last month I've gone down hill dramatically. Prior to Christmas I could walk round the house, manage a very small walk in the town, although I needed a taxi into town. Over 6 weeks, I've gone from that to not even being able to walk from 1 room to another. I had no O2 in the house, but in those 6 weeks, I've been put on O2 all the time, and had a stair lift fitted. I'm puzzled to why it's gone downhill in a matter of weeks.

I'm on braltus, fostair inhaler, ventolin inhaler, not getting any help regarding pulmonary rehab, ( I live alone so they tell me to make my own way 25 miles away ) impossible as I can't even go to the next room.

My questions are, will this improve, seems to have gone downhill so quick.

Any meds that work for you.

Any experience of getting help for pulmonary rehab.

Any other advice.

I'm in the uk.

Thanks for reading, and I hope somebody may have some advice for me, as I'm feeling pretty low about this.

Pat.

[jmsutt73]

So sorry to hear that you are not feeling well. When were you diagnosed with PF? I have IPF and have been told that one can decline very quickly after having long periods of stability, little to no progression of Fibrosis. You didn't mention it, but have or are you presently taking one of the anti-fibrotics, Ofev or Esbriet?

[patcarolyvonne in reply to jmsutt73]

Thanks so much for taking the time to reply but I don't take the medication that you take. I am only on Oxygen but still get very out of breath even when I go from one room to another.At the moment I have 3 different puffers I use every day., the ones that I mentioned in my post.

[Ergendl]

So sorry to read about your difficulties. The BLF has a free exercise video available on its website which you might like to try while you're trying to work out how to get to PR.

[patcarolyvonne in reply to Ergendl]

Sorry, this is all new to me. What's BLF, and working out PR ?? Thanks for taking the time to reply.

[patcarolyvonne in reply to patcarolyvonne]

Ok, just realised PR is pulmonary rehab. Thanks.

[Ergendl in reply to patcarolyvonne]

Yes, and the BFL is the British Lung Foundation, the charity overseeing this chat room page.

[Carnival567]

That has happened to me, so I understand your frustration. Before Christmas, although on 24 hour oxygen I was doing reasonably well. Then just afterwards I was admitted to hospital almost unable to breathe and diagnosed with pulmonary oedema. I spent 9 days in hospital and since discharge I find I struggle to walk the shortest distances and by the end of the day I am unable to undress without getting exhausted. I have bronchiectasis, pulmonary fibrosis and pulmonary hypertension, so a lot going on. I am due for a 24 hour ECG and echocardiogram. I have heart problems anyway, but have not been sent to a specialist centre for the PH, I am hoping the cardiologist will arrange for me to visit one. The one I see at the congenital heart disease clinic didn’t mention it. Something new is going on, but nobody seems to know what!

All the best xx

[philforgot]

It is VERY IMPORTANT that you seek medical advice. Ask your Doctor to call or get a ambulance to the nearest Hospital as this sounds as though you have a infection ? Do you have a "RESCUE PACK" Containing Steroids and Antibiotics ? You should have, however sometimes it is easy for overworked Doctors to miss this as it should be taken up by the Respiratory Nurse at the doctors practice.Steroids can be dangerous so don't just look up "Prednisolone Tablets 5mg" Because depending on your size how much you weigh will depend on the amount.

Insist on being seen, however in some cases the local Doctor will just pass you on to the NHS Hospital, where you can be assessed over a few days. Good Luck for your Future with Respiratory Problems.